Why Texas families are struggling to find care for adults with disabilities

Dec. 27--Since 43-year-old Ivana Schnars moved into a nursing home in Pflugerville, her mom Sue Schnars has tried to make it as comfortable as the home where her daughter spent most of her life. Citrus essential oil perfumes the dorm-like room. Relatives have left sweet messages on a white board. Pink decorations dot the walls.

Unable to care for Ivana Schnars, who is nonverbal and uses a wheelchair, on her own, Sue Schnars moved her out of their North Austin home in August.

Schnars had trouble finding and keeping caregivers for Ivana. With the state's Medicaid reimbursement she could only pay personal attendants $11 an hour without benefits.

"I agonized over this decision," said Schnars. "She's my daughter and I love her. For 43 years, I kept her home. For 43 years, I was able to make sure she was safe and clean and that she had everything that she needed. People at the retirement home are wonderful, but they're not me."

Schnars is using her daughter's social security income to pay for the nursing home.

The turnover rate among attendants is high across the country -- 45 percent to 65 percent -- but stagnant pay rates in Texas have worsened the problem here. Attendants in Texas are paid on average $9.30 an hour while the nationwide average is $11.59, according to an August report by the Texas Health and Human Services Commission.

For nearly a decade, the state has not increased the payment rates of personal attendants in Community Living Assistance and Support Services, the Medicaid program that covered care for Ivana Schnars and 5,600 other Texans. The state sets the attendant rate in the program at about $13 an hour but after administrative fees and payroll taxes are shaved off, the rate families can pay attendants is lower.

Additionally, the state cut the attendant rates of two other Medicaid programs for individuals with disabilities -- Texas Home Living and Home and Community-based Services -- by 21 percent last year to $17.73 an hour to align the rates with other Medicaid programs. The decision affected caregivers for about 8,000 people in both programs. Dozens of individuals with disabilities and their family members had pleaded with the agency in a meeting last year to reconsider the cuts.

The cuts saved the state $26.6 million over a two-year period. Texas Home Living, which providers say has long been a financially difficult program to run, has been hardest hit by the cuts -- 19 providers have terminated contracts.

"On a business level, you can't do something where every month you're not paying your bills and you have to borrow from one program to pay for another program," said Doug Svien of the Company Rock House, a Stephenville provider group that has stopped participating in the Texas Home Living program. "Maybe somebody out there that can do it for less cost than I can do it and God bless them."

Texas Health and Human Services Commission officials said they're working on improving retention and recruitment in Texas, including asking the Legislature to raise the pay for attendants. The agency estimates that it will spend $7.9 billion on community attendant services during the 2020-2021 budget.

"We know long-term care providers in Texas have indicated they are facing difficulties recruiting and retaining the qualified community attendants needed to provide care. We are working to better capture data on attendant turnover and retention, which can be used to help determine effective strategies for improvement," according to a statement from the agency.

'A really hard decision'

Ivana Schnars was born in Peru where her parents were social workers in the 1970s. She was developing normally until a virus attacked her brain, leading to cerebral palsy.

Sue Schnars, who recently retired from the Pflugerville school district as a special education administrator, had for years relied on attendants to feed her daughter, read to her, change her clothes and take her on outings, among other activities. More recently, she relied on them the most to help carry her, something the 61-year-old can no longer do.

Amy Gayer-Byles, Ivana Schnars' caregiver for seven years, struggled to make ends meet. A part-time Austin Community College student saddled with a car note, Gayer-Byles would forgo doctors' appointments and often not use electricity in her apartment and skip meals to pay her bills. Although she loved Schnars -- it's evident by a scrapbook she made of their time together that now sits in Schnars' room at the nursing home -- Gayer-Byles needed to support a family, so she quit.

"That was a really hard decision," Gayer-Byles said.

"There's no other words," Gayer-Byles said through tears. "You're talking about real people. These are families. They're struggling to live a day-to-day life, and more and more hurdles are being put in front of them. It's just unbelievable."

After Gayer-Byles left three years ago, four caregivers followed. One couldn't live off of the $11 an hour wage. Another would bring her personal drama to work, Sue Schnars said.

"I had taken out ads through Care.com. I did Craigslist," Sue Schnars said. "There were plenty of people who responded to my ads but when I told them how much I could pay, they were like, no way. And the responses always were, 'I can't rent an apartment and live in Austin for 11 dollars an hour.'"

Texas has the second highest number of personal attendants -- 196,790, according to report by the Texas health agency. Personal attendants will continue to be in high demand across the country due to an aging population and low pay that has led to high turnover, according to the U.S. Bureau of Labor Statistics.

According to an email Schnars received from the Texas Health and Human Services Commission, an official said, "You are not the first person reporting this issue. Austin seems to have its extra challenges with the relatively high cost of living, but rural areas seem to have staffing issues as well."

QT Preston makes $12 an hour working part time as an attendant, reduced by $1 as a result of recent state cuts, she said.

Preston, who also works as a behavioral therapist, said it would be impossible to live off that wage in Austin without juggling another job.

"Attendants should be paid way more because there is such a need in these individuals' lives. They help the family as a whole because they give parents a much-needed break and an overall improvement of life for everyone involved," Preston said. "A role of an attendant has been downplayed."

Austin resident Jane Ayala, 72, makes $9 an hour working 14 hours a week with a disabled adult client, who is on a Medicaid waiver program.

She takes her client to work at Chuck-e-Cheese's three days a week, picks her up, has lunch with her and takes her to activities. A private agency pays Ayala $9 an hour.

"It probably covers gas and to have lunch with her," Ayala said about her pay. "I just love people and I know that they need a break."

'Chasing nickels'

The state offers Medicaid services to individuals with disabilities through waiver programs. Home and Community-based Services and Texas Home Living programs serve people with more severe intellectual disabilities than the Community Living Assistance and Support Services program.

Personal attendant services covered through these Medicaid programs are meant to keep individuals with disabilities in their own homes where they can either learn to be independent or rely on family to help them.

Staying at home is not only preferred for the well-being of the individual but also is less expensive for the state than paying to live in a group home or some other facility.

When the state proposed the rate cuts in 2017, about 50 people showed up to a hearing to protest the cuts. They said the cuts would force attendants to find jobs in retail and fast food restaurants that pay comparably but require fewer skills. They said the state's most vulnerable people would be in danger because their families would be forced to turn to low-quality attendants.

Employers of these attendants said there is a chronic shortage of staff.

"In the Central Texas area, you can work at Whataburger and get a rate higher than what some are receiving as far as salaries. When we try to find persons we can afford, it's very difficult to find the quality that we're looking for the families we serve," said Andrea Richardson, executive director of the Round Rock-based Bluebonnet Trails Community Services. Bluebonnet Trails also were affected by the cuts.

Daybreak, a large provider, this year ended all but one of its Texas Home Living contracts, according to the state health agency.

"Before this rate reduction happened, providers had already been dropping out of Texas Home Living because rates had been slashed so many times already. This latest one was the icing on the cake," said Sandy Frizzell Batton, executive director with the advocacy group Providers Alliance for Community Services of Texas.

Robert Ham with D&S Community Services, which operates in Austin as well as cities in other parts of Texas, Tennessee and Kentucky, said participating in Texas Home Living is a financial wash for him. Similar employees at state supported living centers for individuals with disabilities make 40 percent to 60 percent more, he said.

"It's incredulous to me," Ham said. "I've been in this business because it's my passion to provide these services. It's always looked at as the state is just giving providers more money. It's not that way. We're chasing nickels."

State health agency officials had dropped the rates in preparation of transitioning these Medicaid waiver programs into managed care, part of a massive shift of Medicaid services mandated by the Legislature. Under managed care, the state contracts with private insurance companies and hospitals to administer services, saving the state money; critics of the model say the private companies, called managed care organizations, have denied care for individuals to save money.

A Medicaid program for children with disabilities has for the last few years been under managed care and over that period of time, hundreds of parents have complained about the managed care organizations unjustly denying critical services for their vulnerable children.

The Health and Human Services Commission is required to release a report annually on the status of personal attendant services in the state as well as recommendations on how to improve retention and decrease turnover. The agency's August report to the Legislative Budget Board and to the governor's office recommended increasing the wages of attendants, as well as improving recruitment through local workforce development; creating a state workforce development plan to improve retention and recruitment of attendants; requiring employers of attendants to provide attendants with information about a federal program that offers low-cost child care; increasing training for attendants to improve job satisfaction; and allowing attendants to live with their clients so that family members can become an attendant and be paid an attendant wage.

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